Editor’s note: This article was originally written in Spanish by Bárbara Herrán for Mi Cerebro Atípico and is viewable en español here.
Have you seen the many memes about how the quarantine for autistic people is easy?
I’m autistic, and I’m a community manager. I really thought that the quarantine was not going to be a challenge for me.
Nothing could be further from the truth—I collapsed on the first day.
But what happened to me, if I’m so great at isolating myself?
It turns out that when you are in isolation with people who do not share your autistic neurology, these people do not let you isolate yourself.
I started the quarantine with the flu, which should have passed by now. But it just won’t go away. I suspect it’s because the stress keeps my defenses down, characterized by very high levels of fatigue which leaves me exhausted by the time noon rolls around.
But also, as soon as the quarantine started, the people around me—who don’t know how to stay in isolation—started to become stuck in a frantic loop about “HOW TO BE PRODUCTIVE DURING QUARANTINE!”
Not having their usual distractions—like work, study, and contact with other people—they demanded more and more attention from me and bombarded me all day with demands. And I tried to satisfy them all.
To make matters worse, these “demands” came in all of the shades necessary to push me into emotional overload: pleas, manipulations of the “you-must-do-it-or-it-will-be-the-end-of-the-world!” variety, nagging, rubbing accomplishments in my face, accusations of laziness, passive aggression, etc.
By the end of the first day, I had gone from being able to do a little to not being able to do anything.
On the second day, I told the person who made the most demands of me to screw herself, and I was left without a job. I started crying and catastrophizing as if the world had ended. I had entered into a meltdown.
I feel ridiculous for melting down—for not communicating to stop the demands at the right time—considering that as an activist I knew that I must take care of myself…
But you see, I thought quarantine = isolation.
It hadn’t occurred to me that so many people from a neurotype that thrives on demands to be distracted and to feel good about themselves would redirect their attention to anything else—including me. They made it impossible for me to take the distance and downtime needed to recharge my energy and social battery.
The only effective way to isolate myself when I am surrounded by people and demands that exceed my energy is to unplug myself, and I did it without even thinking about it. I turned off my technology, told everyone that I was unplugging myself, and started watching the 54 episodes of a rather long TV series, for more than 48 hours running, and without sleeping.
Yesterday my series finally ended, I threw myself into bed, and I slept well for the first time in a couple of weeks.
Today, I finally had recovered enough energy to reflect on all of this. I decided to write it down and share it with you. I turned on my internet, turned on my phone, I communicated with the people who were writing and calling me, I solved a couple of issues, and when I’m finished, I’m going to start cleaning my house (which is upside down after 3 days without attending it).
Today, I have energy again.
Maybe I don’t have enough energy to do everything today, but I’ll do what I can, and I’ll leave the rest for tomorrow or when I have energy again. And that way, I’ll go step-by-step, at my own pace, until I catch up.
Like I’ve done all my life.
The world did not come to an end because I took a couple of days to isolate myself, and the world of all of you and your autistic loved ones is not going to come to an end either.
Recommendations for Quarantine with Autistic People
1) Your autistic loved one will be facing greater difficulties, dealing with the close quarters, broken routines, stress, and finding solitude for themselves; therefore, avoiding overload will be more difficult. Please keep the demands on them low. Let them go at their own pace.
2) Your autistic loved one has real and vital needs to:
- avoid more
- stim more
- mentally distance themselves more
These needs compensate for the fact that their living space has been reduced and people are spending more time around them.
3) Be aware that when people take a break of 15 days…
- the world is not going to end
- the life of the autistic people you know will not end
- their future will not collapse
…because you allow them to rest as much as they need to overcome this situation.
4) Don’t use the autistic people around you to distract and busy yourself. Similarly, don’t use this situation to try to overcompensate with your children to make up for time you don’t spend with them on a regular basis.
If an autistic person has enough energy to interact with you, they will; if they don’t, it is because they can’t. Please respect that.
5) Do not pressure autistic people into unwilling conversation, social interaction, or group activities of any kind. By themselves, they are difficult for us, but in these circumstances, they are painful and sometimes impossible.
6) Respect when autistic people tell you, “I can’t…”
“I can’t” does NOT mean:
- “I don’t want to”
- “I don’t care about you”
- “I don’t care about my future”
- “I have no will”
It only means we can’t, and nothing more than that.
7) If you want to:
- Make a dessert as a family
- Watch a movie as a family
- Play a board game as a family
…and all of the other hundreds of neurotypical/allistic suggestions on the web to distract you during quarantine…
Then do it on your own and for yourself. If your autistic loved one has energy and interest in doing it, they will join in, and if not, do not guilt them for needing to isolate
These activities are meant for the neurology of neurotypical people’s ideas for isolation—not for ours, and even less so if we are overloaded.
Again: Do not try to use your autistic family member to meet your own needs to be socially fulfilled and distracted.
8) On teleworking and distance learning: It is very possible that they cannot handle these demands at this time, due to the overload of having everyone breathing down their neck.
Not being able to means not being able to
Consider taking a break from those.
Again, the world is not going to end if we have to rest for a few days.
- Neurotypical People Are Not Trash - April 10, 2021
- When Parents Say “I HATE AUTISM” Their Words Affect Autistic Lives - June 3, 2020
- For Non-Autistics: How to Survive COVID19 in a World Not Made for Your Neurology - April 21, 2020
These are very good points! You’ve been cited: https://www.wikihow.com/Help-an-Autistic-Family-Member-Cope-with-Home-Quarantine
Now that I got over the excitement of seeing the new article, I’d like to say that these are good thoughts.
Handling quarantine is going pretty well in my family. I think there are several reasons: (1) everyone in this house respects a “no” if someone declines an invitation to socialize, (2) everyone can retreat to a quiet space alone if needed, and (3) we keep things pretty quiet and relaxed. It doesn’t hurt that quarantine isn’t super different from my typical routine, either.
I actually kind of wish I had more social time with my family, so I just need to do more inviting to hang out because sometimes people say yes. But I bet we’ll do something special for my sister’s birthday.
I hope you’re taking good care of yourself, stimming a lot, and enjoying some extra time with your special interests. I hope you can say “no thanks, it’s not a good time for me” or “I really need to be alone right now” when people try to socialize with you and you don’t want to. I hope you are getting lots of rest and staying healthy.
Thanks for your insight and experience. It makes sense both my daughter (dx’d ASC) and also for me (dx’d adult ADHD and dyspraxia). Fortunately for us we are much more used to the self-isolation than the average mixed autistic/allistic household, so I’m grateful for small mercies.
But it’s also a good reminder for me that these are early days, and much as we are used to each other’s almost permanent company, the very existence of the virus and also of the massive uncertainty about how this will play out in the short to medium term means that additional stressors will be at play.